jriva Posted August 2, 2004 Share Posted August 2, 2004 Hi Everyone, In another posting thread, it very clear that some caregivers are having a hard time getting a respite day for themselves. Either from guilt or from feeling that they have no one in their circle of family or friends to sit in for them when they want to run errands or see to their own health needs. So, let's all put our heads together and brainstorm some ways for these caregivers to find some time away from their care recipients. Also, at the risk of sounding like a broken record, if you are a caregiver and you haven't already read the Caregivers Bill of Rights, please do it. You'll find it in the Classic Postings and Advice forum. http://strokesurvivor.net/index.php?showtopic=781 It's clear that some of you are putting too many self-inflicted guilt trips on yourselves and putting up blockades that are keeping you from caring for your own physical and mental health. As you'll hear many times on this posting board, "you can't take care of your husband/parent if you don't take care of yourself." I'll start our brainstorming for ideas for caregiver respite: 1) Check with the nursing homes in your area. Some have day-care services. 2) Find your area commission on aging and ask about what they might have available for respite workers. 3) Find a local caregiver support group. You might find another caregiver who will exchange caregiver days with you; you'd each care for two people one day a week so that you can both have one day off a week. If there is no local support group, consider starting one. 4) If you're near a college or university with a nursing program, see if any of the students there do sitting for shut-ins. Come on, everyone, let's kick a few ideas around!!!! Venting and hugs and crying together serve a very useful purpose, but we can also try to find and list some concrete solutions for a very difficult problem. Jean Link to comment Share on other sites More sharing options...
Terryh708 Posted August 2, 2004 Share Posted August 2, 2004 My two Cents Worth, If there is a Vetrans Hospital in your area and the survivor is a Vetran check with them also as many have a Day program and/or a respite care policy. Denise loves children so I checked with the church youth group about them working with her once a month, eg teaching her how to read again, how to name the colors, etc.. If you live near a military hospital most of them have student nursing programs also. They may be able to help and many of them are used to short notice night-time duty also. Terry Link to comment Share on other sites More sharing options...
2ndChance Posted August 2, 2004 Share Posted August 2, 2004 Check with your nearest Easter Seals office to see if they have a day program or know of one. 2ndChance Link to comment Share on other sites More sharing options...
Earl Posted August 2, 2004 Share Posted August 2, 2004 In Texas and some other states you can dial 211 for assistance to locating and using state and area services. (Independent living - Council on Aging and more) Earl Link to comment Share on other sites More sharing options...
spokangie Posted August 2, 2004 Share Posted August 2, 2004 All good suggestions but what do you do when your husband refuses to go. You can't add the stress forcing him to be where he doesn't want to be. As some of you know that stubborness comes with the teritory, he was stubborn before but it has increased tenfold. There are days that he is willing to do anything and there are days that he just doesn't have the energy. I have not checked in the adult day care yet. I am concerned that they won't have staff that would be willing to help him with toileting. I don't mean just pulling pants down, I mean the whole shabang He went throug six weeks of other people handling him, when he came home he showed remarkable improvement in his attitude. There is such thing as dignity and you loose all of it when you are hospitalised. I want him to keep that dinginty. Where there is a will there is a way and I will find it. I think I might have given the wrong impression, yes I would like to have more free time away from the house, but I also understand that sometimes you just have to take what comes your way and deal with it. My conselation comes from hope that each day he gets better and more closer to independence. My husband requires assistance with standing up, making sure you are close by when he is walking with his hemi walker. I don't want to just drop him off and he sit in a corner for the rest of the day. He can't communicate with words and some questions given him get him confused. Right now he is better off at home. He is not ready to be left anywhere else. I was told by his Sister that when I am gone he is constantly looking at his watch and starts to panick if I am gone more than an hour. Who knows maybe in one of their private little chats that I allow them to have with him they may have insinuated that I will leave him. Some of us have no choice but take little bits of time to ourselves and pray that the next day is better than today for him and me. Take heart not everyone has the same situation Angie Link to comment Share on other sites More sharing options...
Earl Posted August 2, 2004 Share Posted August 2, 2004 Look at the web site: http://www.211.org/about.html One service mentioned is Support for Older Americans and Persons with Disabilities: adult day care, congregate meals, Meals on Wheels, respite care, home health care, transportation, homemaker services. I understand that this may not be match your needs. It is one more bit of information. Earl Link to comment Share on other sites More sharing options...
jriva Posted August 2, 2004 Author Share Posted August 2, 2004 Hi Angie, Are you sure you're not allowing yourself to be manipulated (either consciously or unconsciously) by guilt, anger, stubborness, and/or depression? Self-inflicted guilt, etc. included. Yes, you can leave your husband with a competent sitter or home health aid. And yes, sitters and aids who are either young women in nurse's training or women who work in the home health field will wipe your husband's butt and deal with his pouting while you're gone. And daycares that are attached to nursing homes will also know how to deal with the issues you worry about. Plus there is a good chance that, if you established a respite schedule, your husband will get over his pouting and anxiety after the first month or so. My husband spent a 101 days in a combination of the hospital/nursing home/rehab, so I know exactly what you mean by protecting your husband's diginity, but it may not be entirely possible if his recovery period drags out beyond what you wish it to be. I'm concerned that you will burn yourself out, if you insist that no one else can care for your husband, even for a few hours a week while you get some respite. All of us worry about our care recipients when they are out of our sight---that's natural---but it's not healthy for you, if you let that keep you home 24/7. I don't know how far out you are from the stroke, but how long can you keep this up before your own health suffers? And if it does suffer, who will care for your husband then? I share-cared my Alzheimer's father for five years and have cared for my husband for the past four + years. I've done my share of butt wiping and standing by waiting for falls that thankfully didn't happen. I've dealt (big time!) with confusion issues and the indignities that go with personal patient care and with the inability to communicate. What I've learned along the way is that you can't do it all! Try as we might, martyrizing the caregiver role does as much harm as it does good. You will be a much better caregiver if you allow yourself a weekly break. The caregiver role will eat you up and spit you out, if you don't take care of yourself! Jean P.S. Thanks, everyone, who has added suggestions for caregiver respite! Keep them coming! Link to comment Share on other sites More sharing options...
Guest hostjerri Posted August 2, 2004 Share Posted August 2, 2004 It hadn't ever ocurred to me to do this until I read Jean's thread. I pulled up Google and entered, Respite care, Orange County, CA. Up came a myriad of sites all addressed to this problem. I filtered through several sites and finally found one that had more to offer than any other. I realize I'm in a metropolitan area and may have more access to services than others, but this was a great short-cut to finding resources for help rather than dialing the phone and explaining what I was looking for over & over. Maybe I'm over simplifying, but if I were needing assitance, that's how I'd start. "Let your fingers do the clicking ~ not the walking!" hee hee hee rofl Aunt Tilly Link to comment Share on other sites More sharing options...
Kay Posted October 5, 2004 Share Posted October 5, 2004 Re: Respite for Caregiver I keep repeating this in almost every post, but I can't stress enough how Adult Day Care has helped. I would be a basket case if I had not found the loving Adult Day Care for my hubby that is owned and operated by our local hospital. It is a separate facility nowhere near the hospital. We are in a small town of around 24,000. I would advise anybody whose feeling burnout to seriously make some calls. You never know, the answer might be right under your nose! I had no idea! In their Statement of Purpose, I discovered it was started because of the revelation that CAREGIVERS need a safe, loving evironment with lots of good activities that is affordable to leave a loved one at. Believe me, there is very little "sitting around doing nothing" in this place. They even go on field trips. My husband, who is as stubborn as they come, LOVES IT! A real lifesaver. Kay Link to comment Share on other sites More sharing options...
spokangie Posted October 5, 2004 Share Posted October 5, 2004 IHi Kay.. Adult Day care is fine for someone that is able to take care of themselves.. My husband still needs me to help in the bathroom, and I mean help . I don't want to send him out where he doesn't want to be.. He has been having seizures and even on double medication anything can set them off at anytime.. I realise that they probably have the personell to handle such a situation but I for now prefer not to take that kind of a chance.. His inability to communicate with others would also be a drawback if and when he would need assistance.. When he began Rehab he would all of a sudden just leave towards the door looking for me to take him to the bathroom.. He is also unable to stand on his own, he tried once when I was out and I found him with his pants a quarter down his left leg, but could not manage the right side. The one thing that some people fail to understand is that even thoug he may be able to do it with just one hand, you still have to be able to stand somewhat on your own.. Also he may not be getting the right signal that he is able to do it.. After one and almost year and half I have resigned myself to my short outings now and then.. I am not climbing the walls and I have no resentment towards him because he is unable or unwanting to go out.. He has his moments where he will suggest himself we go out and when we do we have a good time.. Sure Caregivers need respite time. But sometimes that luxury is not afforded to everyone.. I don't mean monetary neither, I mean there is no way I am going to leave him somwhere he does not feel comfortable being.. not now not ever.. no matter how tired I am.. That is how I feel anyway..I know that some of you may disagree. But like all strokes are not the same nor are all Caregivers.. We deal with it in our own way as best as we can.. Besides things are not as bad as they were a year ago. One thing that I have learned is to expect the unexpected and take one day at a time.. Angie Link to comment Share on other sites More sharing options...
cinder Posted October 5, 2004 Share Posted October 5, 2004 Because of dad's mental insecureties it would be impossible to leave him someplace, but...if I were able to familiarize him with an adult daycare environment, any ideas on how to get him there? I don't have a wheelchair van. I have to hire ambulatory for doc visits, or lab work. I have ( with my fiance) dead lifted dad into the car in the past when the ambulance wasn't available. But he weighs 220 and I don't do it unless I have no other recourse. Do these places do pick up? But then I'd have to go with him..wouldn't I? Link to comment Share on other sites More sharing options...
jriva Posted October 5, 2004 Author Share Posted October 5, 2004 Hi Cinder, Have you thought about getting a Hoyer Lift to move your dad around? If you type Hoyer lift into your browser, you'll find lots of information about them on the internet. I don't know if insurance will pay towards them, but it would be worth checking it out. I do know that the state paid for part of the Hoyer Lift for a low income friend of ours. Also watch the newspaper for used medical equipment...lots of good bargains out there for car lifts, hospital beds, wheelchairs, etc. Some towns even have businesses the sale used medical equipment. As for dealing with your dad's insecuries with going to an adult day care, call a few in your area and see how they handle that issue and others specific to your dad. I know when I was looking for one to leave my dementia dad at they would have let me stay with him for the first hour or so for several visits, to let him get used to it gradually. They also had open houses where we could try them out without paying. Like Kay said up above, many of the adult day cares take people on some very neat field trips. (Some I'd like to go on myself.) For those not mobile enough to go, they stayed behind at the center and played cards or games or watch TV. These places try to keep people as busy as they are able to be. We have a shirt-tail relative who can't wait until daycare day to come around each week. Jean P.S. I concede that not all caregivers feel the need for getting a day off once in a while. However, for all the others who are really desperate for an occasional break, let's keep brainstorming ideas for getting respite for caregivers, okay?! Link to comment Share on other sites More sharing options...
cinder Posted October 5, 2004 Share Posted October 5, 2004 Jean, thanks for the advice. I'll look around for adult daycare and check it out. I do have a hoyeur lift, dad's insurance paid for it. It's not good for getting him in and out of the car though. Believe me I tried. Plus it has to be transported to get him out of the car too. They are impossible to move on different terrains, with his weight. When he was still mobile enough to transition with assistance we did take dad to an assisted living facility on their field trip days. They took him fishing once, to a museum... We only had to pay a nominal fee for them to include him. Maybe someone can use that idea...Call and ask then get a calendar of outings. Link to comment Share on other sites More sharing options...
jriva Posted October 5, 2004 Author Share Posted October 5, 2004 Cinder, I hadn't even thought about the idea of just signing my husband for just the field trips days. I'm going to check into that. He'd love it! For him, the more people around the better he likes it. I just can't build enough socialization opportunities into his schedule to satisfy his boredom level. Thanks! Jean Link to comment Share on other sites More sharing options...
cindy Posted October 14, 2004 Share Posted October 14, 2004 Hi Angie, I know how you feel when you said your husband gets nervous or depressed when you are not around. Although my husband can do things for himself, his speech is still greatly affected, his entire world revolves around me. When I am not working he wants me with him at home all the time. Even in the same room. He never was much of a "people person" and since the stroke it's been magnified beyond belief. He would never go to an outing such as the others have described, even if I were there. So what would be the point. And since he started having seizures he can't drive. I have however, just this past week, made a decision for not just my benefit but for his as well. The only people he even feels semi comfortable with are his 32 year old son and 35 year old daughter. Both are married with children. I have asked his son to take him out in his car which he loves, a convertible. To spend a couple of hours with him driving him to the port (a place where he used to love to go and watch the boats come in) and take him to lunch. He probably won't go to a restaurant with him but he might go to a drive through and eat it in the car parked somewhere with a view. Of course he is fighting me about it and doesn't want to do it. My thought on the whole matter is this. He needs to spend more time with someone other than me because I might not be around forever either. No one is guaranteed tomorrow. As I recall, you don't have much support from family members. I'm sure you have thought of SOMEONE that might be able to help him with this. Sure he will be nervous and uncomfortable about it at first as my husband will , but who knows he may actually come to enjoy it. Might be a year from now, but for us it will be a start. Just a different line of thinking on my part. (A revelation if you will). If I am gone he will need to build some sort of relationship with someone other than me. Cindy Link to comment Share on other sites More sharing options...
spokangie Posted October 14, 2004 Share Posted October 14, 2004 Thanks Cindy.. His sons dont' take any interest in him they don't even call to see if he is ok, they expect me to let them know.. As far as outings he won't go without me and then he goes only to the Dr's or sometimes to the store.. We are not at the stage where he feels comfortable using the public bathrooms unless they are in a Dr;s office or Physio.. and then I have to go in with him and help him out. Let me tell you it is not easy, they are not made for left handed persons, we have a heck of a time aranging the chair so that he can grab the bar. Some of them don't have enough room for the wheelchair to turn around in or to close the door. He still has problems transfering into vehicles, he needs assistance getting in and out, none of the people that we know are trained to assist..nor have asked to be taught.. Our outings are short because he gets car sick, he wears a patch but that doesn't work all the time.. Most of our friends have homes that he can not get into they are not wheelchair friendly.. We even had to change our Dentist as he is on the second floor and no elevator, We postponed moving to the coast because of his frequent seizures, he has had 10 so far.. Also the motion sickness thing too.. The trip would have been too much for him.. About 6 months ago his son was going to take him out for a drive, he didn't want to go with him. Two hours later he was in the hospital with a grand mal seizure.. Ever since then they have not offered to take him anywhere, and if I mention moving to another place they practically jump down my throat.. My family is close by to where we are planing on moving maybe even this next summer God willing.. A much bigger network of family that actually cares.. : I have been patient for one year I can be patient for another.. improvements are happening on a daily basis, it is the small set backs such as seizures and now Pneumonia.. But that is life and you deal with the ups and downs as best as you can. Angie : Link to comment Share on other sites More sharing options...
cindy Posted October 14, 2004 Share Posted October 14, 2004 Angie, Jeeeez, what a rock and a hard place. My heart goes out to you and I will be praying the trip to the coast will come ASAP. I'm REALLY glad you're seeing improvements, small as they may be. Your husband is a lucky man and your overwhelming love for him is obvious. Love is a word easily used by many. But to me, it is a committment as you have demonstrated. You and your husband must have been madly in LOVE, committed to each other. I have the greatest respect for you. This might sound cliche but "YOU GO GIRL". HUGS, Cindy p.s. You know what I think sometimes? This site is respite, at least for me. Link to comment Share on other sites More sharing options...
spokangie Posted October 14, 2004 Share Posted October 14, 2004 Cindy you hit the nail on the head.. Just yesterday my hubby finaly came into the den, he WALKED : using his hemi walker.. I read him a couple of posts.. He realy liked the letter to your brain.. I wish that he could type but he still has problems identifying what he sees and what he thinks, sometimes they don't click together.. But I am patient and time is something that we have lots of now.. Thanks for your support... yes some of us are not as lucky as others as far as famiy or friends go.. But I have learned a long time ago that if they are not there for you now they realy were not your real friends, just acquaintances... which you will have many of but only a handfull of true friends will be true to you.. Take care Angie Link to comment Share on other sites More sharing options...
dstraugh Posted December 17, 2007 Share Posted December 17, 2007 recycling this topic to the top - MBM - Donna Link to comment Share on other sites More sharing options...
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